Long post: my baby has cf :(
jhjocelyn
member
I’m one of those
in and out lurkers, I’ve been around since probably July, was active until the
fall when my workload changed my entire bump-ability, and have been trying to
be more regular since. I just figured
out I can post from my kindle, so you should see me around more. Plus, the kind
of support that exists here is going to be very helpful in the days ahead… I do
understand that support goes both ways, so as I get more involved it won’t just
be whines (if it is, call me on it, I’m tough 
.
After an uneventful, like-clock-work birth, we had our perfect little girl on the 13th. I’ll write a true birth story someday, but I won’t bore you all now. Bottom line: straightforward labors and recoveries do exist. I didn’t believe it myself, but we were blessed with just such an experience.
It’s been a rough couple of days. LO has been diagnosed with Cystic Fibrosis. We knew there was a chance she would have it, and throughout the pregnancy were being monitored, but it was just confirmed yesterday. It’s been tough to process as parents, as individuals DH and I react very differently, then we had to tell our families, who are also very different, and each family member has had differing reactions too. Thankfully, mine is farther away and much more laid back. We’re all Christians and have strong enough faith to support us, but that doesn’t mean it’s all easy. DH’s family is nearby, and just wants to be here. This is their first grandchild, it’s hard because as well meaning and loving as they are each of their reactions have been so-not-helpful. Poor DH has had to take the brunt of it. His sister talked to me, and is probably the most sane of the bunch. His mother just wants to come right over and talk(nonstop). His father told him not to get too worked up, the tests could be wrong (it was confirmed at 98% positive). His brother tried to be supportive using faith, saying no matter how long she lives she’ll be safe spiritually(that’s true, but not what you say the first day of the news).
Now, we have to battle things like FIL won’t get a flu shot MIL told him he won’t be allowed to hold the baby till summer, apparently he’s okay with that (which SIL told me but not DH… now I get to tell him why his father’s not excited about coming around). BIL and his wife wanted to stop by, but I remembered that she had a cold when they visited in the hospital (she knew not to get close or hold LO at that point). We asked if she was over it and they said she had a sore throat and stuffy nose this morning. Well then no, you are not coming to my house, my child can’t take that risk. UUGGHH… I hate policing family, and it’s only just begun.
AANNDD we don’t like the pediatrician, so we’re on the hunt for a new one… that’s a whole different post though.
If you made it this far, thanks! I’ll try to include a pic, but I’m very good at it…
bfp#1-10/29/12,EDD: 7/3/13. nothing found @ 1st u/s, natural mc 12/10/12. "Bean"
bfp#2-5/10/13! EDD: 1/18/14. "Peanut" Arrived 1/13/14. Diagnosed with Cystic Fibrosis
bfp#3- 9/26/14. EDD: 5/7/15. no heartbeat found @ 1st u/s, natural mc 10/23/14. "Little Bug"
**Psalm 139:16**
Re: Long post: my baby has cf :(
If it makes you feel any better, I know a young girl with CF that is 23 and married and about to adopt a baby. Every once in a while she'll have a rough time and have to be hospitalized, but for the most part she is doing great.
bfp#1-10/29/12,EDD: 7/3/13. nothing found @ 1st u/s, natural mc 12/10/12. "Bean"
bfp#2-5/10/13! EDD: 1/18/14. "Peanut" Arrived 1/13/14. Diagnosed with Cystic Fibrosis
bfp#3- 9/26/14. EDD: 5/7/15. no heartbeat found @ 1st u/s, natural mc 10/23/14. "Little Bug"
**Psalm 139:16**
I am sympathetic to your struggles with getting family to understand the necessity of protecting her from germs. Hopefully they will "get it" soon.
She is absolutely adorable!!! Congrats!
TTC since 8/2010 (off BCP since 8/2009) Unexplained Infertility
12/10/2012 U/S #1 6w4d - heartbeat EDD 8/1/13
1/18/14 2:11am Abigial Morgan is here! 5lbs 14oz and 18 inches of pure cuteness!!!
partial molar pregnancy : bfp 6.28.10, d/c 8.17.10, 7 rounds methotrexate, cleared 7.1.11
alexander patrick : bfp 1.16.12, born 9.20.12 @ 39w1d, 7 lbs./11 oz./22 in.
scarlett irene elizabeth : bfp 5.24.13, born 2.3.14 @ 41w2d, 7 lbs./13 oz./19 in.
bfp#1-10/29/12,EDD: 7/3/13. nothing found @ 1st u/s, natural mc 12/10/12. "Bean"
bfp#2-5/10/13! EDD: 1/18/14. "Peanut" Arrived 1/13/14. Diagnosed with Cystic Fibrosis
bfp#3- 9/26/14. EDD: 5/7/15. no heartbeat found @ 1st u/s, natural mc 10/23/14. "Little Bug"
**Psalm 139:16**
https://www.massgeneral.org/transplant/doctors/doctor.aspx?ID=16400
Good luck. Wishing you all the best.
bfp#1-10/29/12,EDD: 7/3/13. nothing found @ 1st u/s, natural mc 12/10/12. "Bean"
bfp#2-5/10/13! EDD: 1/18/14. "Peanut" Arrived 1/13/14. Diagnosed with Cystic Fibrosis
bfp#3- 9/26/14. EDD: 5/7/15. no heartbeat found @ 1st u/s, natural mc 10/23/14. "Little Bug"
**Psalm 139:16**
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I know very little about CF but I hope the best for you and your gorgeous little girl, whatever that may be.
I hope YH's family smarten up as well!!
DD1: 12/26/2013 DD2: 08/03/2016 DS1: 05/10/2018 Baby #4: EDD 11/22/2020 (Team Green)
PCOS diagnosed secondary infertility
BFP #1 (letrozole 2.5mg + ovidrel) February 2016, MMC April 2016 @ 7 weeks
BFP #2 (letrozole 5mg + ovidrel) July 2016, Beta #1 359, Beta #2 745, Beta #3 11484
EDD April 9th, 2017
Carter Robert 7.18.08 | Brynn Sophia 5.24.10 | Reid Joseph 9.10.12 | Emerson Mae 1.27.14
I'm a family practice PA and have seen a few patients with CF. If you ever want to talk feel free to PM me.
My cat can read EKGs, can your human do that?
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BIG hugs
Emma Kate - born 10.16.03 @ 29 weeks, weighed 1lb 13oz and 13.5" long.
TTC #3